Going On 9-Years

[Jon J.]

Hello I am new to this forum. I developed Pulsatile Tinnitus back in April of 2004. I woke one morning and there was rhythmic hissing noise in my head that is in sync with my heart beat. It was very disturbing to say the least. I believe my tinnitus was cause from going to too many rock concerts and maybe playing with fireworks as a kid. I don't know and the doctors don't know. Being that my tinnitus is pulsatile in nature the doctors think that it may be vascular. I have been to all kinds of specialist, ENT, ear specialist, have had CT scans, MRI's of my brain. Everything appears normal. I do have some mild to moderate hearing loss. I have been wearing hearing aids for the past 5-6 years and they do tend to help with the tinnitus making it less noticeable and improving my hearing dramatically. The worse part about the tinnitus is the way it has impacted my sleeping. This has been a real nightmare at times. I have become to rely on sleep medications to allow me to get to sleep at night. Even with the medication I only get maybe 3-4 hours of sleep a night and it is not a deep sleep. I have been on Ambien for over 8-years. Way too long. I have tried to get off Ambien cold turkey and that was another nightmare. I had panic attacks because I knew I would not be able to get to sleep. I am now trying to gradually get off Ambien over the next several months. I may be trying a masker that I would wear at night to see if that might help. The other thing that bothers me is knowing that I may have caused this problem by not protecting my hearing over the years. You wish you could turn back the hands of time and not have this problem in the first place but you can't. You need to move forward and deal with it. It is what it is. I have learn to cope with my tinnitus pretty well during the day time. It has not impacted my day time activities/lifestyle drastically. The first couple of years were real tough. It does get better over time. You learn to cope. The biggest problem I have is at nighttime not being able to sleep. That has impacted my life where each night I am anxious not knowing if I am going to be able to sleep or not. I am schedule for a MRI of the veins going to the brain and I am also going to see a neurologist to see if the intracranial blood pressure is high and may be causing the Pulsatile Tinnitus. Maybe they will find something. Who knows. I have come to the point where I know I will probably be living with my tinnitus for the rest of my life. I am looking into everything that I can do to make my tinnitus more tolerable. Proper diet, exercise, learning how to relax and always hopeful that there may be some new medical breakthrough that might help all of us who are suffering from tinnitus. This forum is great resource and it is somewhat comforting to know you are not alone with this condition.

Jon J

 

[Karen]

Hi, Jon J, and welcome!

Your pulsatile tinnitus sounds very much like mine. I've had mine for over three years now, and, like you, I have a high-pitched hissing sound with a pulsating, rhythmic undercurrent that is in time with my heartbeat. I've had various tests, too (MRI, CT scan, carotid Doppler, etc.), and so far nothing has been found. Mine is only in my right ear, and I had hearing loss in that ear, plus regular mild tinnitus before this started. My PT started suddenly, within about 2 weeks after taking a blood pressure drug.

There is usually a vascular component to PT, but so far, I have not been successful in finding a cause. I, too, have trouble sleeping. Very occasionally, when I'm very tired, I get 7 t0 8 hours of sleep, but most of the time I get 2 - 3 hours of fitful sleep, or no sleep at all. I think it is the pulsating feeling that causes us to have insomnia, because it seems to rev up the nervous system. For a long time, especially at the beginning of the PT, I couldn't sleep at all for several nights at a time, and I felt as if my whole body was shaking when I was lying down. Now, however, it has improved, and I am able to at least rest at night.

I wish you luck at the neurologists, and hope he is able to determine what might be causing your condition. I hope you'll report back here, and let us know what happened.

Best wishes,
Karen

 

[Jon J.]

Hi Karen,

Thanks for the reply. Are you taking anything to help you sleep at night? I will update this forum after I see the neurologist.

Good luck with yours

Jon

 

[Karen]

Hi, Jon,

I do have some prescription Ambien, but I haven't taken it in a very long time. Instead, I've been using natural supplements for sleep. Every night, about an hour before bedtime, I take two magnesium chloride tablets, and one Sweet Slumber tablet (Sweet Slumber contains melatonin, valerian root, vitamins, etc.). Some people on this forum have said that the drug Remeron works well for sleep, but I haven't tried it myself.

Are you taking anything for sleep?

Karen

 

[Jon J.]

Hi Karen,

I am currently taking Ambien CR, Trazodone and Buspirone. The Ambien and Trazodone are to help me sleep. The Buspirone is for anxiety. I am trying to get off the Ambien gradually. I would like to get off all medication if I can. The medication does help me get to sleep for 3-4 hours.

Jon

 

[Karen]

Hi, Jon,

I wish you success in getting off the medications. Ambien does work, but it only gives you about 3 - 4 hours' sleep. That was my experience, too, so I decided to do without it.

The natural supplements are more subtle, but they really do work if you give them a chance. You could try gradually weaning yourself off the drugs, one at a time, before trying any natural supplements.

Please stay in touch; I'd like to hear what you find out about your PT. I've kind of given up on doctors for right now, and am trying to "live with it". I may try going back to a doctor again in a few months, but for now, I'm coping OK as things are.

Karen

 

[heartbroken]

I am not at all happy that anyone has this PT problem, but it does somehow encourage me when I realise I am not the only one struggling with this. I long to be able to sleep again WITHOUT medications. at nights, its like labour trying to get ready for sleep. I deliberately try to stay in the dark before I get to bed, I use peppermint oil, I put white noise at my bedside, i mean all this preparation in itself is disturbing. gone were the days, when i would just feel sleepy and fall asleep! it's so draining physically, emotionally, mentally. my entire life has changed because of this. I am not trusted to drive, i have dizziness and headaches all the time. as for exercise, even if i try some light exercise, the pounding beside both ears become so loud as though my heart is angry that i have to stop! it feels like something will explode in my head. i have never been to concerts, around loud noises, have earphones constantly in my ear etc.. so i just don't know how i developed this PT. one thing is i have a slipped disc and suffered for the last 13 years with crippling back pain so don't know if PT could be related to nerve damage in my spine.. at this point, i just want to be able to sleep. i have had to talk to myself everyday to try and deal with all this one day at a time.. it would be a miracle if this PT disappear as suddenly as it came but i don't believe in miracles so i guess not.

 

[Sherri786]

Hello I am new to this forum. I developed Pulsatile Tinnitus back in April of 2004.

Hi Jon

In the beginning when my t was very loud I was taking the Chinese herbal pills called " An Shen bu Xin wan " it really helped me having a peaceful sleep, it's all natural and consists of 12 herbs. I would take 4 or 8 pills at bedtime depending on how high my t was.since I ran out of the pills I've been taking a cup of twinings camomile tea, helps to have a calm sleep.

 

[Sherri786]

I am not at all happy that anyone has this PT problem, but it does somehow encourage me when I realise I am not the only one struggling with this. I long to be able to sleep again WITHOUT medications.

Hello heartbroken, please try camomile tea or the Chinese herbal pills " an Shen bu Xin wan" it's all natural and no side effects, and I would wake up in the mornings feeling good and well rested.

 

[heartbroken]

Hello heartbroken, please try camomile tea or the Chinese herbal pills " an Shen bu Xin wan" it's all natural and no side effects, and I would wake up in the mornings feeling good and well rested.

thanks. I am trying the chamomile tea sleepy time extra and also I heard the leaves of the soursop fruit make a sedative like tea...my hubby came back from Trinidad last night and brought me some of the leaves so I am going to try it tonight. I would keep the Chinese herb on my list for I am always trying something to sleep....thanks again

 

[Sherri786]

You're welcome heartbroken, hope the soursop or camomile helped , best wishes. Keep us updated, thanks.

 

[heartbroken]

so here's a little update that is a BIG deal for me! 2 nights ago, I drank the sour soup leaf tea. The night was not so great but I did sleep some WITHOUT TAKING THE BENZODIAZEPINE. however last night, I tried a different route. I left the leaf to draw in hot water much longer. I took the cherry tart juice around 8.30 pm and then about 10 pm I drank the tea. NO BENZO....and guess what, I fell asleep though I had to plug my ear to keep from hearing the pulsing sound BUT I SLEPT and when I woke up, it was 5 am.!! oh my goodness, for me this is such progress! its been a while since I slept and not had to get up a few times and then struggle to fall back asleep. I now wish I could grow this sour sop in my living room . well I will try again tonight to ensure that this progress is continuous and not just a one night strong belief kinda result if you know what I mean....

 

[Karen]

@heartbroken,

That is great news! I understand exactly where you're coming from, since I have the same problem. Some nights I can sleep (with a little help from melatonin and magnesium), and some nights I can't. The pulsating is too strong to ignore when lying down, and getting back to sleep can be a real struggle.

I am so glad that you've found something that works for sleep! I'd like to know if you have success with JUST the tart cherry juice by itself. If so, I might try it, too.

I wish you a restful night tonight, and for many more nights to come!

 

[heartbroken]

so last night I tried just the soursop leaf tea leaving out the tart cherry juice. experimenting is the only way I would know what works. well I got 2 hours sleep and then it was tossing and turning for a long while. I did not want to look at the time since that makes my anxiety worse but had to eventually. then I realised it was almost 4 am and I had slept only about 2 hours. I felt so helpless and disappointed especially because I had such a great night before. one thing too, is that last night the noise in my head was just so much more turbulent and loud oh my goodness! that is just so frustrating. at 4 am I had to reluctantly take a benzo and now I am up and groggy. I hope others are having some progress and eventually some day we'd all find something that works so that we won't have to use these awful yet needful medication.

 

[Karen]

@heartbroken,

Sorry you had a bad night last night. The noise in your head was probably more turbulent because you didn't sleep; it's kind of a vicious cycle. If you're like me, the pulsating is so much worse without sleep!.

Are you going to try the tart cherry juice without the soursop leaf tea? If so, I'd like to hear how that works for you.

I actually got some sleep last night! The night before last was bad for me; couldn't sleep due to the pulsating.

I hope tonight is better for you. Good luck, and best wishes!

 

[heartbroken]

@heartbroken,

Sorry you had a bad night last night. The noise in your head was probably more turbulent because you didn't sleep; it's kind of a vicious cycle. If you're like me, the pulsating is so much worse without sleep!.

Are you going to try the tart cherry juice without the soursop leaf tea? If so, I'd like to hear how that works for you.

I actually got some sleep last night! The night before last was bad for me; couldn't sleep due to the pulsating.

I hope tonight is better for you. Good luck, and best wishes!

thanks Karen and I am glad you had some sleep last night. people like us learn to appreciate just a few hours when sometimes we experience none at all. All day the noise has been so turbulent and I cannot figure out what triggered it. I don't know what things can make it worse so I don't know what to stay away from. and with the loud pounding sound comes horrid headaches too. you're right its a vicious cycle indeed. i am certainly not going to skip the cherry juice tonight cuz i did last night and well that was a nightmare. tonight i am going back to trying the juice plus tea and see what happens...hopefully i have good news to report tomorrow. i also have a doc appt and i am hoping to ask her to send me for MRI to see if there is any narrowing or kinking in my neck artery (carotid artery) or vein in my neck (jugular vein)...hope you have a better night ..take care.

 

[Jon J.]

Hello,

I found this article in the most recent edition of Tinnitus Today about Pulsatile Tinnitus. I hope everyone finds it useful. I may try contacting Dr. Robb in Arizona.


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Jon

 

[heartbroken]

. very interesting. thanks for posting. I had a cerebral angiogram done. doc said it came back normal. sometimes I am so worried that they are missing something and it might just be too late when they do realise there is a problem that need attention. my head having such turbulent noise night and day is just not something to ignore but I don't know what else to do.

 

[Karen]

Heartbroken,

I've never had a cerebral angiogram, but I was wondering if you have a copy of it on CD? If so, you could consider sending it to another doctor for evaluation. There are some doctors listed on Whooshers.com who you can contact, and you could send it to one of them. Just a suggestion....

I know you're concerned about the headaches and the very loud pulsating.

Mine isn't quite like yours, in that I don't get headaches and the pulsating stays about the same, no matter what I do. Also, I don't have a place on my neck that I can press on to eliminate the sound of the pulsating.

 

[Jon J.]

Here is the article I tried to post earlier. I think I figured out how to do it. Interesting article.


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Jon

 

[Jon J.]

Hi, Jon,

I wish you success in getting off the medications. Ambien does work, but it only gives you about 3 - 4 hours' sleep. That was my experience, too, so I decided to do without it.

The natural supplements are more subtle, but they really do work if you give them a chance. You could try gradually weaning yourself off the drugs, one at a time, before trying any natural supplements.

Please stay in touch; I'd like to hear what you find out about your PT. I've kind of given up on doctors for right now, and am trying to "live with it". I may try going back to a doctor again in a few months, but for now, I'm coping OK as things are.

Karen

This is an update after I visited the specialist in Phoenix, AZ.
I have suffered with Pulsatile Tinnitus for over ten years. My PS is a rhythmic hissing sound that is in sync with my heat beat. The sound is mostly on the left side. I have had most ever test, exam, scan/image done to try to determine what the cause of my PS is from. Most recently I went to see Michael J, A, Robb, MD RObb Oto-Neurology Clinic in Phoenix, AZ. He specializes in disease and disorders of the ear and the brain including vertigo, dizziness, imbalance,tinnitus, ringing and sensitive ears. They performed a CT scan of the temporal bones w/out contrast. This was a much more sensitive CT exam then was conducted before. What they found was "There is a severe focal thinning or dehiscence involving the floor of the left middle cranial fossa at the level of the left temporomandibular joint. The clinical significance of this finding in this patent is not certain." I guess what this means is the bone in the scull that separates the left side of the ear is very thin. The doctor believes that this is what may be causing my PS tinnitus. I am hearing the blood rushing through the veins and arteries on the left side of my head. The doctor feels this is correctable by relining the left side of the base of the skull at the left middle cranial fossa at the level of the left temporomandibular joint. I would love to get rid of my PS but this procedure sounds like brain surgery. The surgery according to the doctor, involves lefting the brain while the base of the skull is relined. I will be getting a second opinion. I will most likely live with this problem unless someone can convince me that this will correct my PS and the risk of the surgery is low. My PS effects my hearing and makes it very difficult to sleep at night. My question to the doctor is how did the bone in the base of the skull become thin to cause the PS. My PS suddenly showed up one morning when there was nothing there before. The doctor has me on a regiment of vitamins base on recent blood work that showed low levels of various constituents. I will be getting my blood retested in 3-months. Any comments from anyone that has a similar problem or diagnosis would be appreciated .

Jon

 

[Karen]

Hi, Jon.

I'm so glad you finally got a diagnosis after 10 years! At least it's good to know the reason for the PT, and I'm happy for you that you have some answers.

My PT sounds a lot like yours -- only one one side (right side, in my case), high-pitched hissing sound, started suddenly, affects hearing. I haven't gotten a diagnosis as yet, and have been trying to "live with it".

If I were you, I would probably want to get a second opinion about the diagnosis, because of the nature of the surgery. Perhaps you could send a copy of that CT scan to another specialist to see if they come up with the same diagnosis (?).
Many people have sent scans to a neurointerventional radiologist in New York -- Dr. Maksim Shapiro at NYU Langone Medical Center. You would need to contact his office first, and I'm told that, for a fee, he will look at your scans.

Thanks, and I wish you success in getting some answers about your condition!

Best wishes,
Karen